Saturday, October 17, 2020

And waiting and waiting and waiting

Insulin Pump 

I really wanted my next entry to be about getting our son started on an insulin pump but NOPE!  We are still waiting.  Insurance would've covered our insulin pump at 6 months post diagnosis which was June 9th but it is now Oct 17th and we have yet to start. We actually have the pump in our possession now which is a big jump from where we were in August when I last posted but it might as well be a paperweight.

We did our pump assessment class through "independent study" and two weeks ago we took the 2nd class which was via zoom.  First we received an email with handouts to read, which we read.  Then we logged into our meeting on our assigned day/time and waited for over twenty minutes; technical difficulties. When we did get into the meeting our trainer read all the handouts to us from a powerpoint and then we were told our pump orders would be sent to our pump rep after the class and we should expect our final "pump start" class to be scheduled by our rep.  

Two weeks and counting and we continue to wait.  I've reached out to children's again and been told that they are a bit behind but they would try to do it that day...that was last week.  There isn't anything to be done either which is the most frustrating part.  I don't want to be the parent that gets a reputation for being mean or aggressive but I FEEL LIKE getting mean and aggressive.

School & Coronavirus

So we've been back to school in all it's remote/distance weird glory.  We'd hoped to start our son on his pump at the beginning of the summer to alleviate the added stress the beginning of a school year can be for a family with two teachers as parents. All four of us "go" to school.  Not this year though.  No insulin pump really prevented us from feeling our son could be on campus when it opens; his school is fully remote now anyway but we signed him up for 100% virtual for the whole year.  Our older son is a Senior this year and he chose 100% virtual as well.  I'm back to campus full time with K-2 students with exceptional needs and my 3-5 graders will be back in a week.  Things seem to be going well so far but some students have arrived with fevers and the "social distancing and health" measures that are being promised aren't being enforced with fidelity.  I anticipate illnesses will be spreading in our building this winter. 

Thursday, August 13, 2020

Beyond Frustrated!

 I got a call today from the Children's Hospital.  The kind nurse was calling to make sure I'd received a response to a voicemail I left for them on July 30th before she deleted the note since no one had marked it "done".  But no, I had not received a call back before today, no it has not been resolved, no. 

I understand there are procedures and rules. I understand there are hoops to be jumped for insurance. I understand the Endocrinology Offices moved at the beginning of the year and they are still trying to sort that. I understand that there is a pandemic.  I understand that I am just one mom trying to provide the best health care for one child.  I understand but I can't just stop...I have to keep making calls and sending emails and reaching out.  If I don't keep pushing it seems the procedures that get us the medical equipment don't proceed.

We knew in December we wanted an insulin pump and we told our care team that. Our insurance company requires 6 months post-diagnosis before a pump can be approved.

We talked about moving to the insulin pump at our 30 day follow up.

We talked about moving to the insulin pump at our 3 month follow up and we tried to get everything we needed to do done at that point but because of the pandemic they were not doing pump assessment classes but were going to start doing them virtually "soon" and they would call us.  That was the end of February. 

At the end of May we had our 6 month follow up.  We said we wanted the insulin pump.  We presented our research to our provider and explained which pump we wanted and why we had chosen that one. He said pump assessment classes would be starting virtually "soon" I pushed and grumped and he finally relented that he wasn't sure when the assessment classes would be going virtually and maybe since we had done the research we could do the class as self-study and he had a nurse send us the power point.  He said he would submit the paperwork for our pump right away and would reach out to our pump representative that day.  He also said someone would call us in 3 days to see if the power point raised any questions. We didn't receive a call but I sent him an email stating that we did the slideshow, had no further questions, and still feel we had chosen the right pump for our son at this time.

We waited through June...nothing.

In July we started emailing and calling and leaving messages and connecting with our pump representative.  The rep said they were still waiting for the initial orders from the hospital.  

At the end of July we received a call from the hospital staff with "exciting news" they were going to start virtual pump classes at the end of August and we were on their list.  I explained that we weren't waiting for a pump class and then asked if she could double check that we were moving forward.  She transferred me to voicemail where I left a message saying someone would call me back in 24 hours.  Nope.

Then today I got the call from the very kind nurse just making sure before she deleted the note that my issue had been resolved.  I'm sorry, kind nurse, that you took the brunt of my emotions this morning.  I know it isn't your fault and I tried to keep my emotions under control but you ended up having to speak to a sobbing woman who is beyond frustrated with the situation.  But I had to trust you when you said you would figure out what was going on and call me back.  After all this I had to trust you to call me back...and you did.  

There are no notes in my son's digital records about the insulin pump.  This is not uncommon because medical professionals are overwhelmed right now and it is more important that they see patients than that they type their notes into a computer.  I know they catch up eventually but it isn't helpful when notes are necessary so that others people can read them and take the next step.

I did receive a return call today from that same nurse.  The notes aren't updated in the system but are on the desk of the same person who has been gathering the necessary Dexcom Data and other paperwork and we just need a doctor's signature before the whole mess is handed off to the insulin pump company to submit to our insurance.  I'm back to feeling hopeful but I wish things didn't have to be so frustrating.  If everyone agrees a device is better care and everyone is on board for having the device and the device is covered by insurance...why must it take months and months to get everything aligned perfectly to get going?  Fingers crossed that the next person I hear from is the pump rep that paperwork is finished and they are moving on to insurance.  If I haven't heard from them by the end of next week then I'll sit down with my notebook, pen, glass of wine, and an open afternoon to make all the calls necessary to prompt things again.

Tuesday, August 4, 2020

Daily Highs or Nightly Lows

While we continue to wait for our son to be approved for an insulin pump (yes waiting and waiting), we are continually trying to manage the ever changing demands of his T1D.  Of course we have the honeymoon period of diabetes that was giving us the sense that things were in pretty good control then we got the CGM and realized that things were in control every 3 hours but in between they were fluctuating wildly.  Now we seem to be going through a period where our current ratios and corrections aren't working and things need to change.

Since we have the Dexcom, we get to look at his patterns over days and weeks.  As someone with a background in managing data and making adjustments to affect change this was right in my wheelhouse.  Unfortunately, waiting 14 days between changes has not really been my forte.  Our medical team really likes to see a pattern that lasts over 10 days before making an adjustment to his basal insulin or even his daily ratios.  I feel like we should be making adjustments a little more frequently than that.  So, we fall somewhere in between. 

We've been increasing N's basal (long acting) insulin over the past two weeks.  He has a pattern of daytime high blood sugars.  His BG starts rising from the moment his feet hit the floor in the morning until his breakfast insulin kicks in.  Then three hours later, when the insulin should be about done and the food should be about gone, his BG starts rising again.  It also rises whenever he is exercising.  It rises and rises.  For several months we would go days without having to give a correction, just covered carbs at meals and we were good.  For the last month we've had to give correction every 3 hours all day long and at least once in the middle of the night!  So up we go with the basal insulin.  Each time it is adjusted the other ratios end up needing adjusting too.  So this process takes several weeks to get a new balance.

Well our new balance is one of the following: we can have basal at level X and he has daytime highs or we can have basal and level Y and we get nighttime lows.  Apparently we can't be in range for both day & night.  I know when we get on insulin pump therapy we can set different basal rates for different time periods so I'm looking forward to that but for now I'm stuck with high blood sugar during the day but a nice steady line through the night or in-range blood sugar during the day with a falling line and a need for a snack in the wee hours of the morning.  I'm opting for the 2 a.m. snack right now since I know the long term effects of high blood sugar and because our son does have a CGM that wakes me when the BG gets below the level I set for it.  The weirdest thing is that it doesn't take much in the night to correct the problem.  He BG falls slowly over several hours until it dips out of range.  I give 4-8 grams of carbs and he bumps back up to 150 then starts falling slowly again until he wakes in the morning.  Thankfully we have the dexcom to wake me up and he is able to crunch up a glucose tab without much memory of being awakened at all.  

I'm tired though!  I'm no spring chicken and waking in the middle of the night is hard on me.  I remember when my kids were under 5 and there was so much nighttime waking going on...how did I do that and still work?  I guess age is a factor.  TIRED.

Sunday, July 26, 2020

The BG Roller Coaster

A couple days ago I miscalculated an insulin correction.  Well, actually, I calculated it perfectly if he was sitting still and resting but since he was exercising at the time I should have given 1/2 a correction.  N has been going high from 2:30-5 daily for a couple weeks now.  This also coincides with the time of day that he likes to play games on the virtual reality with his arms flailing wildly as he fights with a sword, or he is jumping and crawling around through tunnels hiding from enemies. 

Hubby told N that I react to his Dexcom readings like I am riding a scary rollercoaster.  I don't like rollercoasters and I have a lot of angst when BG is out of range.  I watch the Dexcom numbers obsessively until he is back in range.  Hubby says it looks like I'm hanging onto the rollercoaster bar as we go racing down, down, down into the "red" low zones or leaning back anxiously as we click, click, click up the rise heading for the terrifying top.  That is, in fact, how it feels to me sometimes.  I admit it.  I like to keep things under control.  I like to keep things even and smooth and not just with blood sugar; that is how I like everything in my life to be.  Stable.

So I gave too much insulin while he was exercising.  About an hour later he stopped exercising.  His blood sugar started plummeting.  He was at 290 then five minutes later his reading was 256, double arrows down.  Still high though so nothing to be done but watch and worry.  Within 20 minutes he was under 80 and still had double arrows down.  We gave our 15g carbs and were supposed to wait fifteen minutes.  I was freaking out but N said he still felt fine.  Ten minutes later his number was 52, the Dexcom was alarming that he was much too low, and we gave another 15g carbs.  Ten minutes later N was laying on the couch, white as a ghost, shaking hands, no color in his lips, saying he felt "WEIRD" and another 15g of carbs.  Hubby was keeping him talking, I was on the phone with my sister getting the "pep talk" to give the emergency med if we needed.  I have not had to give the emergency med and I'm not looking forward to it.  

Finally, the double arrows down were replaced with an angled arrow down, and the BG only dropped by a few points.  Now I knew we'd given 45g of carbs with NO INSULIN to cover it so I figured we'd be rising and rising soon.  When he got back above 70 we gave him dinner (about 30 minutes early) and made sure that dinner was mainly protein but still  it included 30 carbs (which is a light-carb dinner at our house).  He'd gotten back above 100 at that point and I debated with Hubby and Sis about covering dinner with insulin or waiting and correcting again or ... 

Things all worked out fine.  We were a team working towards the common goal and everything worked out fine.  I have guilt about it but I know I am human and making mistakes will happen.  I have routines and procedures to minimize error and this time I had skipped a step.  We usually confirm math/doses with another person.  Mostly Hubby & I check each other but sometimes I have N check.  Hubby wasn't home when I gave the correction.   

N's BG did spike back into the 200s but it was back in range about forty minutes after that, although we did decide to cover the dinner carbs we didn't do anything about the 45g of carbs that brought him back up.  We usually give 3 units of insulin to cover 45g of carbs.  I had clearly given TOO MUCH INSULIN.  If you've never seen 1 unit of insulin...it is a teeny, tiny, amount.  The difference between healthy and safe and sick and low and dangerous is the size of a pea!  

Three hours later was bedtime snack and we were right back on our routine.  He was close to his bedtime BG so we covered snack and moved on with our night.  Hubby did double-check numbers this time.

I couldn't sleep though.  I worried and stewed all night.  Thankfully we have the Dexcom so I could just roll over and look at my phone and know he was fine.  I didn't get out of bed but the worry was there.  He had a lovely, flat, in-range line all night long.  He woke up the next morning bright-eyed and bushy-tailed.  Kids are so resilient.  They don't hold onto things like mom-brains do.

I'm thankful for our support people.  I had hubby and sister and if I things kept going south I was ready to call another T1D mom and I'm sure she would've jumped in her car and been here to help walk us through that emergency glucagon.  I'm glad it didn't come to that.  One day it might. 

Saturday, July 25, 2020

6 Month Check Up

or check in, or appointment...

We had our second virtual meeting with our endocrinologist this week.  We haven't had an "in person" check up since our 30 day meeting back at the end of December, 2019 thanks to Covid19. 

Our first follow-up appointment was 3 months post diagnosis and was a phone call.  This is our 6 months appointment and we did it via zoom.  I know everyone has different experiences but we've felt super positive about everyone in the medical profession we've worked with since our son arrived in the emergency room the night he was diagnosed with type 1 diabetes in diabetic ketoacidosis.  

We checked into our zoom meeting by first filling out a question form and providing our questions and concerns as well as our current ratios and insulin dosing habits.  A nurse showed up in our meeting next and went over our concerns as well as empathizing with our frustration about the "brakes" that have been placed on our desire to start N on insulin pump therapy caused by the corona virus distancing limitations.  She was understanding and helpful.  

We met with our endocrinologist next and he had obviously spoken with the nurse because he listed our concerns first and made sure we got answer to our questions.  We then reviewed my son's CGM data (still loving that Dexcom G6).  We talked through some high-glucose times we have run into lately and then really jumped into how we could get started on that insulin pump.  We settled on doing our first "pump assessment class" in a condensed version right away.  We are now waiting for our insurance pre-authorization team and whatever hoops we need to jump through for them.  

While we had left the hospital in December knowing we would ultimately have our son on an inuslin pump we have had to modify our timeline.  Insurance-wise, he became eligible for the pump at 6 months post-diagnosis on June 9th.  We knew we'd need to start early based on our experience getting the continuous glucose monitor so we started those conversations at our 30 day check but by our 3 month check the novel corona virus had shut down everything in our state and we suspected it would delay things.  After our appointment in May we became concerned that getting insulin pump therapy may be delayed until 2021 but I'm currently still holding out hope that we'll have N on his first insulin pump by his diaversary in December.  

I can't believe I'm already thinking about his 1 year anniversary of diagnosis.  Probably because my friend D posted about her daughter's diaversary on facebook recently.  I remember the first few nights we were home from the hospital and I called the endo nurse every night...yesterday I gave an over-calculated a correction (by a lot) and we dropped into the scary low range.  We even got out the dreaded red-boxed glucagon but it never occurred to me to call the endo nurse.  We've come a long way.  (D, if you are reading this, you were the one I almost called :)).  

So we are on our way to an insulin pump and we've been using our CGM for over four months now.  Our numbers are looking pretty good.  N is out of range 30-40% of the day right now but our endo says that is fine and probably equates to an A1C of 7-8, which he says is fine but I know it is not as good as we want it.  We actually don't know his A1C because we haven't done it since we were in the hospital when it was so bad that no one wanted to tell me what it was; we were told it was over 11 though.

We were supposed to have received an A1C test from home kit a couple weeks before this appointment but it never came and since they hadn't told me it was coming I didn't know to report it when it didn't show up.  I am curious what it will be.  Our Dexom gives us a "best guess" based on our CGM reading and so if it is near that number we are doing okay. 

We scheduled our next appointment for October and it will be virtual again.  We will have to go to the Children's Hospital 2 hours away for the one after that, probably, but we'll see when we get closer.  Our team told us we were doing fine.  We try our best, re-read parts of our pink panther book every couple months and try to make smart, sustainable changes.  

Things are not as scary or difficult as I feared when I got the diagnosis.  We've adjusted to our normal but we still want the best possible outcomes for N so we are fighting for that insulin pump.  That being said, we choose an insulin pump that doesn't yet have an auto connection to our glucose monitor so it won't be able to act like a pancreas on it's own like some of the others.  To remain competitive, I know that technology will come and for our chosen pump it is supposed to come next year but we'll see if that happens.  We didn't chose the pump that had that capability for a variety of reasons but the most significant is that our son is 11 and we want his first experience to be as "low impact" as possible and that meant an easy site insertion and limited fussing with tubes or removing for showers etc.  This is best for his life-style as an 11-year-old boy and in four years he will be eligible to make a change and his life/needs will be different as he enter High School.  

I still feel blessed, looking at him, that he is in our life and he will have a happy and full life.  That maybe wouldn't have been the case just 100 years ago during my grandparent's time.  I am thankful that I live now and that our son's illness is so very manageable. 

Saturday, July 18, 2020

And we're waiting, and we're waiting, and we're waiting

No news on the insulin pump.  I'm bummed.  We heard from the omnipod rep that our insurance is back to approving these prescriptions and she had us contact the pharmacy that we'll need to use to ship supplies to us.  She texted the other day and asked if we have received any supplies and I got my hopes up.  I'd messaged with her at the beginning of the month and she'd told me she had checked our paperwork at Children's and that we were ready for when the update came but...nope.  According to our health insurance there has been no prescription for the insulin pump pdm, pods, or a change in insulin order.  

Ugh!

I'm not surprised but I'm not happy.  I wanted to believe the medical team we met via phone three months ago who said we'd be fine to start on insulin pump therapy but would likely need to take a zoom pump therapy assessment session (they didn't have them yet but they were sure they would be starting them soon since Covid19 had suspended a lot of in-person care).  I wanted to believe the rep from Omnipod that the paperwork was done and we were just waiting for an update to the omnipod.  I wanted to believe just yesterday when I got that text that we should've started receiving supplies by now.  Wanting something is just not enough.  I emailed our endocrinologist and explained all the research and reading we've done and how ready we believe we are.  I texted the rep back and said we've spoken to insurance and the insurance approved pharmacy for shipping.  I, in fact, did talk to several people because I've already found you have to get transferred through several people before you get someone who knows anything about what you are asking about.  

I'm not 100% sure where our hang up is or what I can possibly do to expedite things.  We want insulin pump therapy for our son, he wants it too, we researched and reviewed and tested and chose a pump, we've spoken repeatedly with the insulin pump company, we've tried expressing our desire to our medical team and we've done a lot of WAITING!  

We have about five weeks before we all start back to whatever crazy shenanigans will be our new school year.  Both hubby and I are teachers and both kids are still school-aged.  None of us want to do the thrown-together-emergency-work/teach/learn-from-home again.  Only five weeks and our district hasn't announced exactly how things will be worked out but they have announced some "options".  I do not want to start figuring out a new piece of medical equipment in the midst of all that but I'll do it for N because I believe it is best for his health.  It's just, it would be easier if we could do it now before the **it-storm starts.

I appreciate that we have these great advancements in treatment options for my son.  I'm thankful that he is living day to day pretty much the same as if he didn't have a chronic health condition.  I'm NOT living the same.  I'm harboring my worry and my concern and my advocacy and my frustration and my impatience.  On a positive note, I phoned a friend about my frustrations and she is wonderful.  She told me she reads this blog sometimes though so now I feel weird writing about her.  She's currently waiting and working to get her daughter a G6 so she gets it.  She is jumping all the hoops but the hoops keep moving and so many of the ones you jump don't seem to move you forward or any closer to your goal at all.  What a messed up system.  I'm going to pour myself a glass of wine and I'll raise it to my fellow T1D mom's tonight.  Keep jumping those hoops ladies!

A day in the life!

So what are you doing with your summer vacation?  This seems like a silly question to me, right now, with a global pandemic, and from someone who lives nearby and visits with me regularly.  You know perfectly well what I'm doing...nothing.  So what does nothing look like for a teacher and mom of a son with type 1 diabetes?

4:30 a.m. My son's cat scratches at the bedroom door.  He is an indoor/outdoor cat but we don't let him out at night because he is the WORST FIGHTER EVER!  He has been to the vet so many times for scratches and bites that have gotten infected.  The vet is pretty sure that he likes to test his strength against raccoons and hasn't yet learned that he can't win.  So he has to stay inside form dusk til dawn but at the crack of dawn he starts moaning about trying to get me to open the cat "freedom" doors.  I always give in too because if I don't just get up and open the door he will sit in N's bedroom and bawl.  I then go back to bed.

6:30 a.m. My other son's dog stands outside my bedroom and shakes and shakes his head to make his collar rattle so I will know he needs to go out.  Ugh!!! I got these animals on purpose.  He can't have a dog door because the cat would use it to go outside and brawl so he is stuck inside overnight too and by this time he has to pee.  He is 12 years old so I take pity on him and let him out.  I try to let him out the back door without letting my cat out of my bedroom.  If she makes it out of my bedroom she will get lonely in about 30 minutes and start singing in the kids' hallway but if she stays in my room she will get back in bed with me.  I go back to bed but 9/10 I cannot get back to sleep.

7:20ish a.m.  I give up.  I'm wide awake.  I get up, let the cat out, let the dog out again, and make coffee. Now this is the golden time in my day.  All the other humans in my house are asleep  No one needs anything!  I can sip my coffee and enjoy my solitude.  This is when I can get things done too because there are no interruptions but I can't do anything that would wake the others.  Most days this is sipping coffee, scrolling through facebook, and completing any online professional development work I am doing.  This summer I'm also on a couple of school district planning teams so this is when I work on those tasks too. 

8:30is a.m N wakes up.  BG check, insulin injection, and make his breakfast.  He likes his morning to be spent in his room so he gets his T1D stuff out of the way then heads back to his room to play on his computer or watch netflix and waits for me to bring his breakfast.  We've come to some trial & error timings that work for us and we've found that if he wakes up in range he should get his breakfast 25 minutes after his insulin.  If he wakes at the higher end or above his range he gets his breakfast 45 minutes after insulin.  He eats cereal and bacon every morning (if I don't force him to try something else) so we know what works for this breakfast most of the time. 

9:15 a.m. Breakfast is delivered and no one else will be awake for a while so out to the garage I go to walk on the treadmill for 30 minutes.  Here is what I know about me and exercise...we aren't really compatible.  I give myself full permission to refuse the treadmill any day I want but I have to go out and turn it on and walk on it for 1 minute before I can choose I don't want to do it.  Most days that means I go ahead and walk for 30 minutes.  About once a week I just do the 1 minute. 

10:00-Lunch This time is continuing with work meetings, professional development, setting activities for the student who is still doing online work, or my own personal projects like painting or sewing masks or reading a book.  I'm into the sewing right now so that wins most days.  I have watched some painting tutorials but haven't done a new painting this summer yet.  It feels like I don't really feel like it is summer because I don't know what the plan for fall is going to be.  I'm hoping that after our superintendent gives us the plan I will be able to relax for a couple of weeks before I start back into it. 

After lunch there is a long stretch when there will not be a need for insulin so this is when I might visit my dad/sister at their house or I will go for a walk in the park with my mom.  If I don't get out of the house then this time is spent procrastinating household chores while binge watching netflix.  Sometimes I do laundry or make masks to feel productive.  Today I researched if I want an embroidery machine or not while watching the Mysteries of the Abandoned marathon. 

4:00ish is when I start making dinner.  A thankless dinner that will take between 20-60 minutes to create so that the two humans I built can spend 6 minutes eating it and about that same amount of time telling me they don't really like X,Y, or Z about it.  I don't enjoy cooking.  I've written about this before and I'll write about it again but it isn't getting any more enjoyable for me.  I don't mind the parts of cooking.  Chopping onions, slicing bread, putting rice in the cooker, stirring sauces.  I don't mind any of that but the sum total of making a meal is a loss for me. 

Dinner is between 5 & 6 and comes with insulin and timing issues.  We were eating at the table every night before Covid19 shut us down but now we don't seem to make it to the table more than a couple times a week.  Everyone is so involved in their activities and their schedules are all wonky from being home since mid-March.  Also, there is some sorrow in following our dinner routine since we aren't able to engage in a lot of our other routines of the summer.  Usually we would be discussing our upcoming vacation plans or reliving our recent vacation.  We'd talk about the friends we'd seen or who we had spent time with and what we were planning for tomorrow.  It isn't very interesting to talk about staying home and how we will be doing more of that.  We don't even talk ahead about fall so conversation can be kind of stunted.  The boys are all building a new gaming computer together so lately that has been the conversation but once it is done who knows.

Evening    After dinner is the first time R and I really spend any time together.  He is a very outgoing and busy guy and he can't sit in the house like the rest of us.  He isn't content to play video games all day or watch TV.  He needs to expend some energy so he spends most of the day working outside in the yard, visiting his mom, walking in parks, pokemon hunting in his truck, or running errands.  Now he and I have a couple hours before bedtime to hang out together and we spend it trying to find something that we both want on TV but this is futile.  We should get back to playing cribbage, which we used to do every evening.  I'm going to get out the cribbage board tonight...I've decided. 

8:00    Snack time for N with insulin to get his BG to about 150 so he can go to bed.  He finishes his snack and he and R read a chapter book together.  M grew out of wanting to read with me when he started middle school and N is starting middle school in the fall so I'm not sure how much more time we're going to have for this routine but we are enjoying it while it lasts.  

9:30    N and I are both in bed.  R & M stay up later.  R comes to bed by 11 usually and I hear M do his nightly bedtime routine at about 1 a.m.  

11:30     I naturally wake up at about this time after months of T1D.  N's BG comes down at this time of night from his snack and it can drop by quite a bit so I just peek then am back to sleep (most of the time).  If he doesn't drop below his range between 11:30 & 12 he probably will stay steady through the night.  Before the Dexcom, we were checking BG at 3 a.m. and found him low quite a lot.  Since we've gotten the Dexcom and refined our practice we've found that if he never goes low at 3 a.m.  He goes low between 11:30 & 12 or not at all.  Pretty much.  Who knew.

Not thrilling but this is what we do.  It's funny reading it.  I feel so stressed and worried so much of the time right now that when I read back through this I'm wondering how I spend all my time.  It isn't wasted because I'm using it but it sure doesn't look like I'm using it for productivity.  Ah well.

Wednesday, July 8, 2020

The Waiting Game...Again

So here we are again...waiting.  We are six months post-diagnosis and should currently be eligible for insulin pump therapy which is exciting and we've been waiting for this time but we are currently

WAITING

Our Children's Hospital was wonderful while we were getting our initial diagnosis about providing us information and training and they have been available as we've progressed in our journey and we've made it clear from the beginning that we are interested in insulin pump therapy as we know it will better keep our son in a healthy range.  At our 3 month appointment, held via phone call, we told our endocrinologist that we wanted insulin pump therapy and wanted to do anything we could to be ready when he reached 6 months which is when our insurance company will cover the insulin pump.  At that time we were told they weren't holding classes but maybe they would have them virtually over the summer. Due to the pandemic we haven't been able to attend any training on insulin pump therapy but we aren't too concerned about our ability to learn what we need in a distance model.  

We have done our own reading and research and yes, we've watched youtube videos and read blogs of others with type 1 diabetes.  We talked to friends who have insulin pump therapy as part of their lives. We  narrowed our scope to two devices, got a trial of each device and ultimately chose the one we felt would be the best "first" insulin pump for our son.  We have been keeping in contact with the insulin pump representative in our area and were made aware that our insurance wasn't covering the existing PDM for the pump until their next update and we've been told that the update occurred and insurance will start allowing coverage of new prescriptions for this insulin pump this week.  Fingers crossed but I'm only hopeful, not really optimistic.  I am pleased because this means we will likely get this done before fall but I'm not holding out hope that we'll have the insulin pump easily or quickly.  It took a lot of calling and sorting to get the approval on our CGM so I'm guessing this will be the same rigmarole.  I'm ready and willing to spend hours on the phone and feel that frustration but I wouldn't mind being spared the experience so fingers crossed.

Friday, June 26, 2020

Highs & Lows can appear out of nowhere!

I feel like we've come a long way with our understanding of type 1 diabetes in six months.  Who knew we'd have to get so knowledgeable but here we are.  The thing no one can help with though is that you can do everything right, everything you've been taught, and yet...

Highs &  Lows can appear out of nowhere!

They come out of nowhere sometimes and there seems to be no rhyme or reason.  I know there probably is something: growth spurt? low-level asymptomatic illness? change in the weather? poor sleep the previous night? hormones/puberty? full moon?

N my 11-year-old with T1D has been amazing for the past six months.  He is handling it all with good humor and some resignation.  I know he isn't "sneaking" food or forgetting to bolus because there isn't a need for him to sneak and we make sure there are always two brains working out a bolus.  We are trying to teach him good habits to take care of his chronic health condition because someday he'll be out on his own and we won't be right there anymore.  

N likes cereal for breakfast.  I know, I know, there are better options but we've been assured (repeatedly) that he can and should eat what he wants and cover the carbs.  What I mean by better options is that there are carbs that have less effect on the range of blood sugar, the spike and fall.  High fiber, lower carb meals work better for that post-meal spike and several hours of blood sugar stability and we know this but we also know he is 11 and he likes cereal and he can have it.  He doesn't eat fruity choco marshmallow whatever, he eats a whole grain cereal but it is still cereal.  He gets his bolus and we wait 25 minutes to give his breakfast of 30 grams of carbs and a protein.  About an hour later his blood sugar goes up out of range but it usually comes back down within an hour.  This has been his norm for the three months we've been "distance learning" by staying home.  Same meal every morning.  The boy likes his routines!  

We've tried adjusting the time between the bolus and the meal and 25 minutes is about it.  If we wait too long he has a low followed by a spike and if we give food too early the spike stays elevated longer and the peak is higher so 25 minutes.  Until two weeks ago.  Two weeks ago the spike was 100 BG higher than previously!  It also spiked up and stayed up for 3 hours.  It came back into range about twenty minutes before his next meal & bolus would occur.  

The other thing we noticed, about the same time, is that his lunch bolus isn't working quite as well and there is a weird drop and raise between lunch and dinner.  He gets lunch at about noon and we can only give insulin every three hours due to insulin on board and not being on a pump or calculator that can help us.  To avoid "stacking insulin" we've been told to wait 3 hours before correcting with insulin or bolusing & eating.  So he eats at noon, has a smaller spike that is on the high side of in-range for him at 170-180, sometimes out of range but lasting less than thirty minutes above range.  Then at about two hours & forty minutes his blood sugar falls to the lower end of his range to around 100.  He doesn't usually want an afternoon snack; probably because he isn't going to school and working up an appetite.  He could have insulin at 3 but he often doesn't want a snack and he is in-range so none is needed.  Then he spends the next hour with a steady glucose rise until he is out of range and he stays that way until dinner at 6.  I know, I know, I could give a correction but then I feel like I have to push dinner back or worry that I'm stacking insulin.  Ugh!

We have our math, ratios, corrections, factors, etc.  We do the math as we've been taught and most of the time it works out.  But for two weeks now we've had this nonsense that makes me wonder what I'm missing.  Thankfully we can send in our numbers to the medical team at the Children's Hospital and get a professional opinion but I sent in numbers this morning by 9:30 and haven't heard anything back from them.  Since it is Friday, I assume I won't hear anything until Monday.  

So we'll keep doing what we do.  We may swap out some preferred foods for less preferred ones for a few days to try to get things back into a more preferred pattern.  Our CGM lets us look at our graphs and helps us check for patterns.  It also makes suggestions for ways to adjust when a pattern emerges and we've used this to change our long-acting insulin dose over the past week but it hasn't changed the daytime pattern and we are starting to see midnight lows again so we are holding.  

Type 1 Diabetes is just an uncooperative toddler that follows rules when it feels like it and shakes them all up when it doesn't.   Here's hoping we aren't heading into a pattern of return to the 3 am club.  Right now his glucose is in range less than 80% of the day even with corrections every three hours, and at night he is dipping below range between 11:30-12.  

I guess this is why I drink so much coffee, or wine...

Friday, June 19, 2020

2020 School Year End

Today is the last day of the 2019-2020 school year. ๐Ÿ˜

This year has been quite the adventure.  We got my son's type 1 diabetes diagnosis in December.  My school was closed for snow then when we got back we had a water pipe break and flood part of the school over a weekend and we were closed again.  On March 13th our schools closed due to Covid19 and we've been "distance" teaching and learning at my house.  In the midst of this the black lives matter movement grew exponentially with protests and rallies.

Many years ago, I read a research report on the effects of watching the news in the United States.  I don't remember how I came across it, probably sipping coffee in my pjs while my family slept in.  I often go down a click-road and am often surprised at where I end up.  The research showed that the amount of news watching a person did was directly correlated with the level of unhappiness for that person.  What?  Yes, people who watch the news are unhappy!  Maybe people who don't watch the news are happier because they are oblivious but I know watching the news doesn't bring me joy so I often don't do it.  I rely on my friends and relatives to just give me the important and big events condensed and without the sensationalism.  So then along comes a global pandemic and I'm home all day every day...

I'm not watching the news but I am reading it.  I scroll through the internet in the mornings and peruse the main news topics.  What a bunch of jumbled mess.  I guess I've come to the time in my life when I will now say "back in my day".  I admit I never gave much though to the news and it's legitimacy when I was young but I fantasize that at one time our news was reporting facts.  It probably still is but it is difficult to tell right now.  It seems to be that "news" is just a blatant attempt to out-shock the competition.  This morning in my "news feed" there were four articles back to back that each contradicted the other.  Chasing down my own information was difficult and when I finally was able to find a source I felt confident was providing some research-based information it didn't seem to support any of  the sensational articles I had just read.  I have the time, ability, and desire to chase down a source but many people don't.  I'm guessing they only read the article with a title that matches their opinion or if they read multiple articles they would lean towards their existing opinion because there is no compelling reason given not to.  

I'm digressing...

The school year is over.  For me, and several of my students, next week is going to feel exactly like the previous three months.  I will sip my coffee while my family sleeps, review student's responses from the previous assignment, set a new learning target or make an adjustment to the lessons, and create their assignments for the day or week.  These students will follow the routine their families have set for them and I expect to see each student submitting work pretty much in keeping with the time they have been submitting work for the past three months.  I will still be joining zoom meetings with select groups of colleagues as we try to plan for re-opening in the Fall without much in the way of guidelines or accountability from those who set the guidelines.  

But mostly, I'll have my days to enjoy the sun and my family and sit on my porch with my book and glass of wine or a lemonade. My mind may try to race from the sensational news to the uncertainty about the coming school year.  I will review my social media and try to skim over everyone's personal opinions on masks vs. no masks to enjoy pictures of friends and family.  Time marches on and it will this summer too.  My plans have changed since R & I were planning a wedding ceremony for July but we've cancelled/postponed it.  We feel married already anyway and whenever we have the ceremony we want our people to feel safe to attend.   

Wednesday, June 10, 2020

Oh the Woes

So yesterday our dexcom stopped providing information for almost an hour.  We hung in there and hoped for the best but it happened again in the afternoon and right around dinner time.  Today we lost signal for over an hour and reached out to dexcom.  They were GREAT! but I'm still tired and frustrated.

A while back I wrote about how frustrating it is to have exactly 90 days of supplies to last 3 months with no backups or spares at the end of that term.  We did get our next 90 day supply yesterday so we currently have 90 days of sensors and one transmitter that should last 90 days. 

When I talked to dexcom today they wondered why our transmitter hadn't warned us that we wouldn't have enough battery because the battery expires at 90 days but our sensor session wasn't due to expire until June 12.  So our transmitter needs replacing today (even though technically it should last until tomorrow I was told) but we only had 9 sensors each lasting 10 days originally so why would the sensor be expiring before we were finished with our last sensor?  I don't know and he couldn't answer it either.  He wondered if maybe I hadn't put a sensor on one day?  No I definitely have put the sensor on each time it was due although we did move it from our initial morning start to the afternoon between sessions once.  

No worries, they are sending us a replacement sensor because we need to end our session early and start a new session with a new transmitter.  I wonder if anyone else would see the problem here.  My transmitter is now going into use two days before it was meant to so we will likely run out of transmitter before our next 90 day supply shows up.  I know this is a minor issue and I should be grateful that we have this great technology and I don't have to poke N's finger 5-8 times per day but I have had to poke it several times yesterday and several times today while we are dealing with all this and near the end of our 90 days our transmitter will run out of battery and this time I won't have another available because they don't ship them a day before the 90 day mark...ugh!

Of course, today is also a day that for some unknown reason, N is running with higher than average blood sugars.  He has been over 200 every time we've checked and each time we give a correction but it doesn't seem to be doing any good at all!  My new community of experts all reassure me that this kind of thing happens.  It could be something he ate, or stress, or growth spurt, or not enough liquids, or a full moon but it is not because I am doing anything wrong.  

That is something I heard myself telling hubby just a few minutes ago when he got home and wondered why we've been high all day and last night and why he keeps getting "no data" alerts.  We're fine, we're good, we've got this under control as much as we are able to have it under control.  I'm tired, I was awake last night watching the blood sugar rise and rise and unable to make a correction because I didn't want to risk stacking insulin.  This is still better than five months ago.  I'm just saying it is a lot and I've only been doing it for six months.  Other people have been doing this for years or their whole lives and without all this fabulous technology.  

That technology sure has it's advantages and some disadvantages.  I can't believe I'm thinking this but I guess I should go ahead and call about the insulin pump.  I mean, I've already been on the phone with medical things for over an hour today, might as well spend another hour or so to get told that we aren't getting an insulin pump yet.  Doesn't hurt to ask though:)

Wednesday, June 3, 2020

In the nick of time

So our insurance has a specific company we can order our Dexcom CGM supplies from.  Even though these supplies are available at local pharmacies, I have to order them from a healthcare supply company but I can get, according to insurance, 3-months of supplies at once.  

Sounds good right?

Hmmm.  One Dexcom sensor lasts 10 days so for 3 months I get 9 sensors.  90 days of supplies for three months but some months have 31 days in them.  I cannot order new supplies until 12 weeks after my previous order.  I tried to order earlier online but the shipping date was for exactly 12 weeks from the last order.  I called the company this week just to make sure there were no other options and was told it was out of their hands, nothing they could do.  It isn't a large problem but it is an additional stress and we have plenty of stress, full up of stress, no thanks I don't need anymore stress.

So on the day they will send our next shipment we will have 7 days left of our current supply and they say it takes 4-5 days once they are shipped.  So if everything works out we will get the new sensors the day before we need one. 

I asked, not really expecting a satisfying answer, what happens if this sensor fails, or the adhesive wears off and it gets too loose, or the shipment is delayed?  The answer I got was "just give us a call and we'll make sure to ship you a sensor."  Um, you are already shipping sensors and they may not arrive in time but your solution is to ship me one?  I'm tired already of this and I've only been doing it for a week shy of 6 months. 

I'm a member of a type-1-diabetes facebook group in my general region (within 4 hours of my location) so I asked them about it.  I got several "groups" of answers.  

1. You just have to deal with it, work within the system, you can always go back to poking his finger 5-8 times a day and waking up in the middle of the night to check blood glucose levels for the few days while you wait for your shipment to arrive.  It only happens like this every three months. 

2. Pay for a box of sensors out of your own pocket so you have a little leeway. A box of sensors without insurance is over $350 from what I could find but sometimes costco has them on sale in their pharmacy for less a few people told me.

3. Just don't use a sensor for 5-10 days this time around but order on time and you'll be ahead for a while but, just so you know, you will eventually use that time up depending on how many days are in the month and where the weekend falls on your shipping date so you'll have to do this at least once a year.

4. Switch insurance companies.

I appreciate this group, I really do but these are four variations of bend over. That sucks. 

This group is full of amazing people though.  They never post negatively towards others in their shoes.  They never say "you are not entitled to your feelings on this" but they also don't let you wallow in self pity.  They try to lift you up and cheer you on and remind you that you've got this because you are the only one who can do it.  

Many members of this group, who I've never met, reached out in private messages to me.  They offered to loan me a sensor of theirs and trusted me to replace it when my shipment arrived.  They offered to deliver it to my house in the middle of the night if I needed; some of these people were over a two hour drive away. They've been where I stand and they know how it feels to tell your child that we are back on finger pokes for no reason other than that we can't have a sensor a few days before we will need it because insurance thinks we can't be trusted with it.  I guess they are worried we may overdose.  

I'm thankful we have the options we do but frustrated with the hoop jumping.  I will likely look into a new insurance option next fall when our open enrollment comes around and if we switch it will start in January so at least another six months.  It will likely just be a new set of issues though that I will have to learn to navigate.  When to call, who to ask for, how to get things done.  I am super fortunate that I have access to the types of health supplies I do have access to for my son but disillusioned a bit by the process.

So I'll just keep up the fight and know that others are out there making the same phone calls and feeling the same disappointments; connecting themselves with some people online and being thankful that other's hearts and trust is so much greater than could be imagined. It does feel strange to me how one thing can leave me so full of hope and grumpy sorrow at the same time.

Monday, June 1, 2020

Are you still writing?

Notes & Things

I write little notes on my calendar when I'm happy or stressed.  I don't write them the day I have the thought but I move the calendar forward a month or two or three and write something and then I find it again.  In May these were the notes: 

  • Remember when you thought you'd never get a CGM? 
    • yep...now I feel like we've had it forever 
  • Bet you know the carb count on all the favorite foods by heart now.
    • we still have a whiteboard with lots of our common choices and their carb count in the kitchen but I almost never look at it
  • R is the best! "I'm thirsty"
    • so we were watching a "redneck" comedian one night and he was telling about how his wife said she was too hot and he put down his book, got out of his bed, and adjusted the thermostat - it was a fun show and R and I laughed and laughed at that one since I had just finished commenting that I was thirsty and R got up and got me a glass of water

So a friend asks me a few days ago if I'm still writing.  She knows I was writing a "journal" about my son's diagnosis and how we are all adjusting to that.  I am still writing but clearly not as much and there are two main reasons for that.  First, we are so much more confident in our management now that things don't stress me quite as much as before.  At least, that is what I'm telling myself but probably I'm just more accustomed to this stress.

Second, I'm struggling with the learning curve of becoming a "distance education" provider and it has me on my computer for 4-6+ hours a day.  By the time I have my own time in the evening I do not want to look at my computer and if I do bring it to the couch with me I just end up working some more.  And, of course, both my boys are distance learning right now too.  My teen doesn't need much support to get his schooling done but my 5th grader needs a lot of prompting and cajoling to get any work done.

I've always liked the challenge of picking up a new skill as long as it is something I feel passionate about.  I like the feeling that I don't have it yet but knowing that I will get it.  Thank goodness for that too because I am learning a lot as an educator right now and if I didn't enjoy the push I'd be a quivering mix of exhaustion and frustration.  The high needs programs in my school district met early and frequently when campus closed and we've come a long way.  At my previous school I had a teaching "partner".  She taught the younger grades and I the older right across the hall from each other.  We co-planned, vented, and supported each other and I took that for granted a lot.  It is one of the things I've missed the most in my current position.  

In my current school, I am the only high needs specialist in the building.  Students with this level of exceptional need have only been in this building for the five years I've been here so many teachers have very limited experience with students with ASD or Down syndrome or the other lower incidence disabilities.  I've missed having someone right there to talk to about students, programming, supporting paras, and supporting general education teachers.  

When the campus closed the other two high needs elementary teachers and I made a plan to work together and try to keep our programs aligned in what we were providing and I had a professional community again. We meet weekly and we are keeping each other moving forward and growing.  We agreed on several points right away.  
  1. Keep our students connected and supported with calls, live sessions, and videos. 
  2. Provide respite when/where we could for families who are used to multiple services and providers who would suddenly be "on-their-own" 24/7.
  3. Focus most of our attention on creating supports that could carry forward into the coming school years rather than investing our valuable time in things that would only serve our students in this crisis teaching
  4. Keep our IEPs and Evaluations up to date and make amendments when campus reopens
So that is where all my time is going.  We started with some maintenance level binder work and tools that students were familiar with and could do with minimal adult support (for students who could do that).  We were hoping this would give families a way of giving a work task and walking away for 10-15 minutes.  Many families have been able to do that.  

We also set up online learning sessions for families who wanted that option.  I had one family who wanted daily sessions immediately and other families have added them as the weeks have gone on.  At one point I was running 12 live sessions per week but we're down to 6-8 session per week now.  Some families scheduled sessions and were not able to regularly login for them but we kept trying.  For those that are consistently showing up, we're now able to provide positive interaction and social connection, minimal instruction, but we can do some valid assessment of skills that are being taught on our new learning system.


We adopted two new learning systems.  Unique Learning Systems with News to You and Seesaw. I've used News to You for years and really feel it has a place for some of my students but since none of them had used ULS before I couldn't find an easy and intuitive way for them to use it during the closure.  I am definitely seeing the potential in the units and plans and am looking forward to using it for years to come in the classroom.  One of the other programs is relying primarily on this learning platform as her students are firmly at this level.  

The other learning platform, Seesaw, has become my new favorite thing!  It allows us to post our own teaching video and a follow up activity that is interactive for our students.  For my program, we've had over 200 assignments submitted since closing and that is with only a handful of students participating.  I'm going to use Seesaw for years to come and I'm pretty excited about the potential.  For now, it is giving us a way to try to get learning and instruction to our students that is differentiated to their needs and abilities.  

With these options I'm reaching 11/12 of my students.  That last student may be participating in the print work we provided for him but I can't be sure of that.  His family is working at this time and since I can reach them by phone about twice a month I know they are doing their best and just trying to get through day by day.

My first year as a teacher (a million years ago) I had a mentor who was a resource room teacher.  She later became my principal and ultimately is now serving as a curriculum director.  I took her for granted a lot too but I always think about her.  I read somewhere that people don't always remember what you say but they remember how you make them feel and this woman knows how to make others feel heard, valued, and accepted.  I've tried to take a page from her book and be a person that makes others feel valued. We are so very disconnected from others right now and yet it seems to be the one thing that everyone can agree on: we need other people.  We need and want that connection.  So I try to continue to reach out to my colleagues and friends and be available to them as best I can.  I'm pretty good at video calls now so dial me up.  A couple months ago if you told me I'd be staring at myself on zoom for 3+ hours a day I would've thought you'd lost your mind๐Ÿ˜€  

Saturday, May 30, 2020

How is an Insulin Pump like a Pandemic?

So I'm a fairly new to type 1 diabetes parent.  My son was diagnosed at age 10 less than six months ago.  I'm also an educator during a global pandemic that has closed schools across my country.  I've been working / teaching from home since March 13th and it is now May 30th.  Our county is on a stay home stay safe order and while other parts of our state are moving to slightly fewer restrictions, my county didn't meet the minimum criteria for that yet.  Certainly, I'm not an expert at any of these things but I have come to an understanding with my own emotions at least.

It seems there are a lot of powerful feelings related to the pandemic and the resulting recommendations.  There is fear, loneliness, anger, regret, resentment and the whole gamut.  I had a conversation with a friend who said she'd just rather die than keep living with all these restrictions.  She said it was "no kind of life".  

I talk to educators and parents every day.  They are tired, they are frustrated, they are done.  They want life to go back to normal.  Kids back in school, economy open, going to work, coming home, enjoying their time off, going out on the town and all that comes with a healthy world.  

Many want to blame someone, to point a finger at another person and say "you are doing this to me and it isn't fair."  To feel that this situation is being forced upon them (which it is) but they want a person to be responsible.  I understand.  If a person, or government, or conspiracy, or whatever were behind this then it can be changed, channeled, fixed.  I have a lot of empathy for their feelings and their struggle. They want someone they can call and tell that they need X,Y,Z for their quality of life. They've tried to be good and follow the rules but they don't want to wait anymore.  

On a separate and yet related note.  We've been waiting for our son to be approved for an insulin pump by meeting all the requirements of the insurance company which included being six months post-diagnosis.  That means we should be able to get started on pump therapy in June. We've been working with our medical team and the pump company to check off all our requirements.  There were concerns about the inability to attend training during the pandemic and how could we meet those requirements at a time like this but these issues have been resolved and creative ways have been found to meet those.  We thought we had things set up and ready to go and have been quietly marking the days off in our minds to a time when our son's quality of life & diabetes management would be improved as he moved from multiple daily injections to insulin pump therapy.

About three weeks ago, I got a phone call from the insulin pump representative.  The insurance company has suspended new prescriptions until the next update on the pump we've been working towards.  We were planning to get a pump at the beginning of June and instead we may have to wait until the end of July or beginning of August to get started on the pump.  

I felt all my feelings about this.  Anger, resentment, sorrow, and exhaustion.  I want to be angry at someone.  I want someone to blame so I can call that person up and tell them how important this thing is to me and my family.  How it will make our quality of life so much better.  How we've been struggling and waiting for this to make it better.  We've tried to be good and follow the rules and we don't want to wait anymore.

So How is an Insulin Pump like a Pandemic?

Maybe you already know what I'm about to say here.  The pandemic SUCKS! Waiting for an insulin pump SUCKS!  Yes that is true on both counts but it isn't the only way these two things are alike.  The insurance company won't let us have an insulin pump!  The government won't let us live our lives! I hear these statements more as demands in my head as I read them back.  These aren't really the truth of the situation on either count.  Does it change if we ask them as questions...Why won't the insurance company give me an insulin pump?  Why won't the government relieve the restrictions?

If I assume BEST INTENT then the answers are the same.  Waiting SUCKS but it is necessary for the greater good. I'm not knowledgeable enough to make all the decisions because I can't be knowledgeable in everything.  I have to rely on experts. What has the greatest positive affect on me may not be best for the majority.  I have to rely on the systems and structures that are part of my country; things I've had a vote in. Are all the elected officials people I chose?  NOPE but I have faith that the system will keep the greater good going.  Maybe I'm naive.  I know an individual person can be selfish, I'm proof of that all on my own.  These people, in these positions, are working under a set of guidelines meant to account for the most positive outcome for the majority.  

We have leaders on purpose whose job is to work towards a greater good.  My medical providers and the insurance company are also working towards a greater good.  In order to work towards a common good that supports a majority then...

I DON'T ALWAYS GET MY WAY!

I've talked this over with some of my very close friends and we all come to the same conclusion.  We don't always get what we want right now, in this moment, even though we may be good and deserving and doing all the right things because we live in a society and a community.  This is HOW I support my community.  Vote, work, try, live, laugh, love, accept, empathize, and assume best intent.

Again, I know it seems naive. I know not every human in a position of power is putting the greater good in the forefront of their mind/actions.  I know the insurance company has a bottom line.  I choose to believe most PEOPLE are good and I choose to believe that those in positions to work for the good of society will do so.

If our leaders threw open our world today and it was too soon the losses would weigh on all of us for the rest of our lives.  

If the insurance company ignored their policy and it had a negative impact on an already compromised group's health we would hold them accountable.

Our community will eventually move forward with a lessening of restrictions and my hope is that it will be well timed and the cost won't outweigh the benefit. My son will get on insulin pump therapy and my hope is that the cost won't outweigh the benefit.

I'll wait.  I'll do what I can.  I'll check my privilege and entitlement and trust in the best intentions of those who are meant to advocate for the welfare of the whole community.  I don't really have a choice in this waiting or how long it will take but I always have a choice.  I can choose to make it miserable and filled with anger and resentment or I can choose to make it a moment of grace, patience, love, and acceptance.  In a life that may last 100 years, this time will seem but a moment when I'm looking back.  I'd like that moment to be one I'm proud of.

I appreciate my life in all of its highs and lows. 

Monday, May 25, 2020

Insecure CGM

"I think it's just insecure mom."

This is what my son tells me as his dexcom asks for calibration, again.  What a crack-up he is.  He has the greatest attitude about all of this.  When we got our diagnosis in December we knew right away that we wanted to take advantage of the option to have a continuous glucose monitor but we had to wait 30 days.  It actually took quite a bit longer than that to get everything situated with our insurance company but thankfully we worked it all out.  

I'm frequently amazed at how quickly we humans can get accustomed to new situations.  We haven't even been handling type 1 diabetes for 6 months yet but it has fit itself into our routines and our lives and I have to make a conscious effort now to recall how things were before (most of the time).  Sometimes I do feel frustrated by the inconvenience of it all but then I remember that my child gets to live a full and productive life and that wasn't always the case for people with diabetes so I quite my whining.  

So we've been using the dexcom for several months now and are on our seventh session.  This time though our dexcom was struggling for some reason.  It started as soon as the session warm up ended and the alert went off asking for a calibration.  My son and I looked at each other in confusion.  We do sometimes calibrate it on the first day because we find it reads low for him and we don't like to treat a low when he is certain he isn't low.  So we shrugged and giggled a bit about how it was just anticipating what we were going to do anyway and we calibrated.  No big deal.  

Ten minutes later my son is back out with another calibration alert.  Hmmm. Okay, we calibrate again and the dex and finger stick are reading within 10 of each other so I put it out of my mind.  For about an hour and he's back out.  That first day I got so frustrated with it which is silly.  The G5 required calibration but we'd come into CGM with the G6 and have never known anything else.  It doesn't require a calibration unless symptoms aren't matching the reading but suddenly we're doing finger pokes all day which is what I wanted to avoid by getting a CGM.  I even looked for a way to turn off the calibration alert but nope, can't find it, have to ignore it or do the calibration.  I do NOT want to teach my son to ignore alerts so we calibrated over and over again.  The numbers were always pretty close; nothing of concern. 

The next day it asked for a couple of calibrations and I reached out to an online community regarding this.  Many other people said sometimes they get a faulty sensor or their dexcom doesn't read well when the child isn't drinking enough.  We haven't been on the sensor long enough to have any extra supplies.  As a matter of fact, they will be sending us our next 3 month supply when we are on our LAST DAY of my existing supply (and due to insurance I can't get this any faster?). So I didn't want to change the sensor early.  Finally by day four it had fallen into a pattern of wanting calibration once a day at around bedtime.  By day 7, as I was putting my son to bed only to make him get up and wash his hands and poke his finger, I said "sorry about this dexcom." 

My bright, intelligent, and funny 11-year-old responded "I think it is just insecure mom."  

I giggled and said "What do you mean?"

"You know.  Oh no, what if I'm not the right number? Maybe I better check? Fingers crossed.  Hopefully I'm good?  Am I, am I?  Okay, I'm good.  or am I?"

Funny kid.  Thankfully this sensor session ended and we put on a new one.  It has been three days and hasn't once asked for a calibration.

Wednesday, May 6, 2020

Birthday Diabetes!

Nighttime Highs & Lows

This is my son's first birthday with type 1 diabetes.  He is still sleeping this morning while I have been up for two hours sipping coffee.  Incidentally, I was also up for two hours last night but I wasn't sipping coffee then.

I am so thankful we have the Dexcom continuous glucose monitor that lets me "follow" his blood sugar on my phone.  I can crawl into my bed each night and know that I don't have to check on him because my phone will let me know if something isn't right.  I said I don't HAVE to, I find that I do stand outside his room peeking in at him several nights a week.  Having a newly diagnosed type 1 is like getting a new baby - you pretty much are fiddling with the child every few hours and when things are finally settled and good you watch them sleep.

Well last night the thing that wasn't right was he started running high.  This is a pretty rare nighttime occurrence for him; low is the usual play.  I don't know if his insulin just wasn't covering correctly, or maybe we didn't get a good injection spot but it was like we hadn't given him insulin at all for his bedtime snack.  Up and up he went.  I have my phone set to alert when he is over 180 for 30 minutes although that isn't a number that concerns me much these days.  Half hour later he was over 200 and half hour after that he was over 250 and still arrow pointing up.  I did peek into his room and he was very rosy cheeked, all his covers were kicked to the foot of the bed, and his fan was aimed right at him...poor guy!

Since we don't have an insulin pump yet or an intelligent insulin pen we have to wait 3 hours before giving more insulin to avoid the "stacked insulin" low.  But I did wake him last night and deliver an extra insulin injection to get those numbers back in range.  Not a great sleeping night for me but thankfully the extra injection did the trick and he was back in range about forty minutes after I gave it.  Then I slept poorly for a while worrying that he would be low next but he held a steady line for the rest of the night.

The night before last I was up for two hours too.  That was a more typical event for us, the dex woke me at about 11:30 pm with a low alert.  I woke him up and gave him 15g of carbs in the form of apple juice.  Then I waited and watched and waited some more.  It was about 12:15 when his levels started coming back up; I knew they would so I avoided the urge to give another 15g when things didn't turn around right away.  It is funny how much we've changed our management since those first few nights home.  Originally I would give 15g, wait 15 minutes, and give more carbs if his numbers hadn't turned but what we've found by looking at our data over the past few months is that he takes a long time to digest.  So if we follow the 15/15 at night we end up taking him from a low to the upper 300s about 75 minutes later.  We have to be a little more patient which is hard when your phone is beeping and the number is just sitting in the low range and you are a worried parent. 

Happy Birthday & Celebrating = Food?

As I was saying, my son is turning 11 today!  Such an exciting time for him.  He is having a quarantine birthday since our state is still on "stay home, stay safe" orders.  No friends over, no going to the trampoline zone, nope, nope, nope.  He'll get a quarantine birthday story & maybe I'll get him a t-shirt about it. Stores here have been closed for weeks and shipping from online options is delayed but we have our fingers crossed as his gift says it will arrive today (after being delayed 3x). 

Since N's diagnosis I have become VERY AWARE that we use food as a celebration in our family.  I knew this before but it is very apparent now that our celebrations and joyous times are often tied to sweets and foods.  I've been struggling with this over the past five months as we've gotten more accustomed to life with type 1 diabetes.  Cupcakes, cookies, brownies, root beer floats, french fries, chicken nuggets, fast food, eating out, bread, rolls, biscuits, yep - we like food rewards in our family.  Makes us happy but for one member of our family it doesn't always make him feel good.  Today we will try to balance our food-based celebrating with other ways of celebrating.  We've done this with some success at each celebration since our December diagnosis.  I'm sure as the years roll by we'll be less and less food driven and create new norms but this year it has been difficult to figure out what to substitute in for our previous habits.  

Today we are going to have home-made air-fryer mozzarella sticks and veggies for dinner to keep our carb count low so we can add in a cupcake or two.  We have to get creative due to Covid-19 anyway so we are adding chalk highlights to our hair for fun and if the weather cooperates we'll be doing some tie-dye in our backyard!  Here's hoping this birthday is memorable for being unique and fun!

(At bedtime my son says "today was great! wasn't it mom?" Yes it was)

Thursday, April 9, 2020

Spring Break & Trying the Omnipod Sticker

Spring Break!

We are still home but this week is technically spring break!  I wish I could say I"m finally taking a break from online meetings and staring at a computer all day but our state just announced school closures will continue through the end of this school year.  I knew that was coming but it was heartbreaking to realize this school year will be distance all the way.

I am also working on my renewal for my National Boards.  This is a pretty in-depth profile of my professional growth from the past nine years and includes video taped lessons and reflections on my teaching practice.  The original timeline for completion was May so my plan was to video tape throughout March, then watch the video lessons, pick the best, and work on the reflection writing over spring break.  Fortunately I did begin video taping the second week in March but unfortunately I had at total of 3 days of video taping lessons before Covid-19 closed our campus.  Many of these lessons couldn't be used because I did not receive back permission slips to include all of my students in the submission and in a classroom students are often walking around in the background while you teach. After deleting all of those I had exactly three lessons left that met the time requirement.  Hmmm, wish me luck.

Omnipod Dash

So my T1D son is wearing an omnipod dash "sticker".  It gives us an idea of the adhesive, the weight and size of the pump, and how well he tolerates it's presence on his body for 3 days.  It isn't an active pump though so we get none of the benefits and we didn't get the whole experience.  This pump is tubeless and waterproof which are both strong pros for my son.  He is worried that his cat will chew on a tube in the middle of the night because Alfie currently chews up any earbuds he can find.  I like that they are in clinical trials for a new system that would work with his dexcom on a loop system but we can't put our faith in that  happening soon.  We have to choose from what we have in front of us. Sounds like this system would require him to carry his phone for the dexcom and the separate PDM.  We'd be able to suspend his basal insulin if needed to prevent hypoglycemia. He would be spared the 5 daily injections he gets currently.  That is a lot of positive.

Wednesday, April 1, 2020

Stay Home, Stay Safe, Stay Strong & Insulin Pump Therapy

Stay Home, Stay Safe, Stay Strong, Stay "Sane"

So we are almost to spring break here!  Just two more days.  Of course neither I nor my kids and hubby have set foot on our respective school campus' for the past two and a half weeks.  We are staying home and staying safe.

My older son is a junior in HS and he is taking several AP classes that are meeting via zoom and continuing with their syllabus.  He also tried to update a bunch of his programs on his computer, crashed the whole system, and had to borrow my computer to do one of his online classes while I had to keep working from my phone.

My younger son is a fifth grader and his teacher is sending renew, refresh, review activities but they don't seem very essential so we aren't doing most of them in favor of working on Khan Academy and exploring science, cooking, gardening, and hobbies (things we don't usually have much time for during the school year). He is also getting used to all the extra information we have with his CGM and all the "let's try..." that I keep saying to him trying to reduce his post meal spike.

As teachers of children with low incidence disabilities, hubby and I have been working with our school administrators to review learning platforms, conducting zoom IEP & evaluation meetings, and using shared working sites to collaborate with other special education teachers and staff to create specially designed instruction models that will serve our students from a distance without expecting parents to suddenly become learning partners or teachers assistants.  This has been no small feat when we are looking at a range of skills from within 2 years of grade level and working on academic content to catch up all the way to just learning to respond to yes/no questions using eye gaze.  I'm actually putting in more hours and working harder than when we are on campus and truthfully I just wish we could go back.  I miss my students and colleagues.  I miss the routine.  I miss being in my element.  But I am happy that I am able to stay home with my family and am fortunate that I am keeping busy and not spending time worrying.

Insulin Pumps on the Brain

We had our visit with our endocrinologist this week via phone call.  It was convenient to have dexcom clarity so we could share his last two week's data with them and we all got to look at the same information.  I'm anxious to start the process of insulin pump therapy but we will have to wait until 6 months post diagnosis for insurance and that won't happen until June.  If getting the dexcom approved taught me anything it is that I should start working on things now.

We've actually done a lot of research already on the main pump options available to us and have it narrowed down to just two.  We've spoken to reps from each company, we have handouts and user guides, and we are even getting a sample of one.  We've talked with all our new friends that have diabetes or are caring for a child with diabetes to see what they do and don't like about the pump they are on.  We've watched videos of the site change for each device.  We definitely see pros and cons for each option and it feels like a HUGE decision.  It will be his pump for at least 4 years before we'll be able to change to something else if we don't like it.   I know someone who has an insulin pump but chose to go back to multiple daily injections because she finds the pump too frustrating.  I do not want to end up in that same situation.

It does seem that insulin pump preference has a lot to do with how you live and what you need but when you are first starting out with this diagnosis it is difficult to have any real idea what is and is not a match for your/your child's lifestyle.  Adding to the difficulty is that we've been home for three weeks so as we think about things our vision of life and what we need is skewed.

Things to keep pondering, goodness knows we have the time right now.

Stay Safe

Sunday, March 22, 2020

Covid19...Staying Home

Well, we've been home for 10 days now and counting.  I'm thankful hubby and I are both teachers so we are currently working from home during the week and are able to be home with our kids and not having to worry too much about the financial implications so many others are facing.  We have our home, plenty of items in the pantry, and an exorbitant amount of home entertainment.

So what are we doing?

N and M have been keeping busy on their computers; mostly keeping to their rooms.  Since they were already connected with their friends digitally the only difference for them this week was that they didn't go to school.  They are staying pretty entertained with online gaming and social media.  Since I work in the school district where the kids go to school, I knew where we weren't in the process of figuring out how to provide for kids with school campuses closed.  It made it easy to decide that we'd give ourselves this first week as spring break.  I didn't put a schedule into place or stress about the "missed" educational opportunity.  We just took the week as a break with the kids taking the lead on how to entertain themselves.  I figure as they satiate themselves on their leisure activities we can start adding in academics and make a more formal schedule.  We have implemented a new physical education program though - we got a virtual reality gaming headset and we each spend at least 30 minutes on it playing games that require physical exertion.  The sweatiest game is the one where you use your swords to bash these blocks in time to music; love it!

During the week I participated in my first ever Zoom meeting with the special education staff.  This was a great practice run for me since this is likely how I'll be doing my IEP and evaluation meetings for the next few weeks.  We had a good discussion about how best to support our families of students with complex special needs during the school closure.  Not sure what the ultimate resolution is going to be but we were able to put together some resources and start reaching out to community programs that may help.  I had originally thought we might try to work directly with our students outside or in smaller groups on campus but after watching the news for the past week I guess that was just naive thinking.

Hubby & I decided to go ahead and start on the "summer project list" that we had going.  I'm staining the kitchen cabinets from an orange 80s oak to a darker mahogany.  I love the way it is turning out but it is a LOT of work.  Hubby spent time at his rental property as his renters moved out at the end of the month.  He did some minor fixes in the house, cleaned up the yard, and installed a new fence.

Today Hubby is in our backyard taking down one side of our dilapidated fencing and putting in new.  The recent windstorm was pushing our fence over so it's good we have time to get it back in shape so our beagle can have freedom in the yard.  I was up a lot over the past three nights so I took it easy today; just installed some new shelves in the kitchen for cookbooks and knick-knacks.  I'll be back to staining cabinets tomorrow.

So what does staying home/distancing mean for our son with T1D...not too much.  I'm feeling really grateful that he got his dexcom G6 supplies right before this all started.  We've had his first sensor on for about 8 days now and we're finding it to be a blessing in a cursed fashion (those nighttime alarms are a beast).  Since he isn't attending school this week we weren't sure how his body would respond.  He consumes more carbs on the weekends usually than during the week so I figured he'd be running higher on the blood sugars but he has been more active at home than he is at school so he's actually been running on the low side.

The past three nights the dex alarm has gone off warning of low blood sugar and downward trends.  Of course this falls on a weekend when I don't usually hear back from our team when I send in numbers and I'm not confident in making too many adjustments myself.  I re-read the chapter in my pink panther book on thinking scales and dosing though and tonight we're going to lower his long-acting insulin.  Hopefully that allows us to get some sleep.  Last night that alarm went off 3 times and he ended up having 45 carbs with no cover to make it through the night in a safe range.  WOW!  Good thing we have the CGM or I would be awake all night checking on him.  We'll send in numbers Monday morning and will likely hear back on what to do within a few hours.  I'm exhausted though from being awake although I'm thankful we have the dexcom so I can sleep knowing that if he goes low it will alarm and wake me up...which it did...over and over again.  I'm blaming the new VR gaming system.  He has been playing those active games for about an hour in the morning and an hour in the evening after dinner.

Overall our first week on distancing and staying home has gone well.  We're in the middle of several projects to keep us busy.  The kids are happy enough and not too bored yet.  Time will tell but I'm sure eventually we will begin to feel a little stir crazy.  I don't have a high social need so this is pretty nice for me but Hubby likes to spend time out socializing and he will likely get tired of being couped up at home.  M is more like me, he likes to be at home with his things and he can spend as much time as he wants visiting with his friends online.  N likes to see his friends and do active things so this may end up being harder for him.  Time will tell.


Wednesday, March 18, 2020

Getting Used to CGM

We're up and running with our Dexcom G6 and we love it; especially N who is the one wearing it and getting a reprieve from all the finger poking.  He was very nervous to do the initial insertion but it went smoothly and he said he barely felt a thing which was a relief for both of us.

We started his first Dexcom cycle on Saturday right after breakfast and we have only done a finger poke check 1 time.  It's funny how you become comfortable with the old and familiar though.  I've wanted to confirm his readings a million times since Saturday but I'm resisting the urge.  We are getting good, reliable readings and he shouldn't have to poke his finger just because I now know we aren't managing things quite as well as we thought.

Things we like:
  • easy to insert with little pain and easy to follow directions
  • readings are excellent, update every five minutes
  • device can be set for a high and a low alarm in addition to the non-optional critical alerts
  • can be read on the sensor or a phone app 
    • turns out my son doesn't have a supported model of phone so we'll be upgrading soon
    • once he has the right phone his numbers can be shared to my phone so I'll get alarms too
  • downloading to a computer is easy and the information is presented well, easy to read, and is already making a difference in how we manage
  • you can add information like when/how much insulin you give, carbs, exercise etc
    • this is a plus but I keep forgetting to do it - I'm so used to writing in the book that it has become automatic but inputting into the sensor isn't happening consistently yet
Things we aren't loving:
  • alarms - These are a plus for me but they are a challenge for N.  He has mostly been relying on the adults to manage his numbers and make sure he stays in range.  We may insist he have extra water or ask that he take a break from the computer and get some physical time and he is always very easy going about it but he hasn't really been paying attention to why we make these requests.  With the alarms he is the one who gets the alarm and reads the message.  He then comes to me to figure out what we should do.  Again, this is a plus because I am able to discuss what is happening, why, and what to do but for him the first few days has been more stressful.
  • Stickiness - he has been wearing his dexcom for three full days with light activity.  We are on social isolation due to covid-19 so he isn't going to school and we aren't really leaving our house.  The sticky tape holding his device in place started peeling up on day two and it is supposed to keep the device in place for 10 days.  Thankfully we have amazon delivery and we've just received some over-patches to try to keep it in place for the duration.  We'll see how they do.
Now for the reason we got the dexcom in the first place; it is supposed to help us do a better job of staying in his range.  Turns out when you have more data/information, you realize you weren't managing things as well as you'd thought.  When we were only taking data every three hours, before a meal, (and of course the middle of the night data) we were seeing that most of the time he was in range.  We were feeling pretty confident.  That's probably why they don't want you to start of on a CGM because the learning curve would feel much steeper.  Now that we have the Dex we see that we are spiking after meals, sometimes into the 300+ range!  He also hangs out in the mid 200 range for about 2.5 hours at dinner and comes back into range just before the 3 hour mark.  So we used to think we were doing well at our dinner management but hmmm not so awesome.

The positive to all of this is that knowing is helping us to make adjustments.  We've pushed his wait between insulin and eating to 20 minutes and that made a noticeable difference in the severity of the spike in numbers.  The first day we just did our normal thing and didn't worry about things.  Day two we started paying attention and thinking about adjustments.  Yesterday we made adjustments to the wait between insulin and eating and also some changes to the bedtime snack options.  Today I looked at all those graphs on my computer and see the benefit of the changes and where we need to keep adjusting. 

It is a whole new game having the continuous glucose monitor.  Turns out I've gotten a benefit from the corona virus, we are home and able to spend time figuring this new information out and how to manage better with some time on our hands.  There's that unexpected good in an otherwise unfavorable situation.